RESOURCES
Surgeries
Video – Perspectives on the Care of Children with Trisomy 18 and 13
From the SOFT 2020 Virtual ConferenceSession 1 of the Professionals Panel Dr. John Carey discusses Perspectives on the Care of Children with Trisomy 18 and 13. https://youtu.be/guSnYEeLW3Q
Video – Shining moments from the TRIS project
The first of a series of videos from the SOFT 2020 Virtual Conference. Deborah A. Bruns, Ph.D. shares shining moments from the TRIS project: An overview and review of activities with Deborah A....
Megan Hayes (full Trisomy 18) Turns 40 years Old!
Megan Hayes, oldest known individual in the US (2nd oldest in the world) with Full Trisomy 18 has recently turned 40 years old. A longtime member of SOFT, Megan lives with her parents Ron and Sara...
2020 SOFT Virtual Conference is coming in July
The 2020 SOFT Virtual Conference planning is underway and we are really excited to share our event with you. The team has been working hard to make sure our virtual event feels as much like home as...
Black Lives Matter
Black Lives Matter SOFT is a family consisting of many beautifully diverse individuals. Loving a person with a trisomy condition is the glue that holds us all together. Today and every day, we stand...
Video: Routine Health Care for Children with Trisomy 13
What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 13? Dr. John Carey, MD and medical advisor for SOFT discusses current medical...
Video – Constipation 101
If you get any two or more parents of children with Trisomy together the conversation will inevitably turn to the subject of constipation. Constipation is one of the most common health issues that...
Attitudes Toward Hypothetical Uses of Gene-Editing Technologies
The following paper is an interesting article published recently in The CRISPR Journal. The main author, Erika Snure Beckman, performed this work for a Master’s degree while a genetic counseling...